Leg ache/pain from PMR or Pred?

[Purpleprimate]

Having been on Pred for 2.5 years having had real problems decreasing, & when I getting to 7/8mg life became intolerable. New Rheumy asked what is worse not being able to function properly or taking enough Pred to make life about normal. So have gone up to 25mg, I think I originally started at 20mg. I am now able to move around reasonably well but not back to where I was when I first took 20mg 2.5 years ago. I have now been on 25mg for 3wks but finding walking difficult, my legs don't work quite how they should, get pain in my thighs especially at the back, feels like hamstrings up to my glutes. I can walk about but it becomes quite tiring especially going up stairs & after being out & about for a while need to lie down & have a rest.

My balance has also become worse with slight disorientation, ok when sitting down.

So I'm wondering whether my PMR is under control but the symptoms I'm experiencing are down to the longer term effects of the Pred having caused some myopathy, or just weakening of muscles, ligaments & tendons. Although after sitting down in the evening on standing up my legs can be very uncomfortable.

I'm not very sure where to go from here so if anyone with the knowledge or a similar experience could give me some advice as to what I might do I'd be very grateful.

Thanks!

[PMRpro Ambassador]

Everyone is different - but I think we end up with more problems if we are poorly managed for any length of time. It could be either the pred or the PMR -or both

[Seacat30]

It doesn't sound as though the Rheumy's advice to take more pred to make life 'about normal' has worked. How about trying to discuss that with them? Maybe they should reassess the situation?

[piglette]

25mg is around the top dose for PMR. It is possible that since you got PMR two and a half years ago you have become less active and your body is not so flexible any more. Also age creeps up on us all. As the others suggest the steroids might have had some side effects too.

[Purpleprimate in reply to piglette]

Did discuss with rheumy where to start back at & I suggested 25mg, given 20mg was not working very well, & he said if I was happy with that do it - I like the fact a doctor actually asks you what you might want, doesn't just tell you. Yes, what you have suggested could be the result of less exercise through Covid then the PMR. Will speak with rheumy again in a week or so.

Thank you.

[piglette in reply to Purpleprimate]

It sounds like you have a doctor who listens which seems to be pretty rare nowadays. That is good news there are still some around! Hope things improve. Do you have the opportunity to take any exercise? ?

[cycli]

almost identical to that which I have posted elsewhere Purpleprimate. I think you are spot on and it is pred. induced myopathy. Weakened legs through waste and lesser neuromuscular control causing balance issues. Also in my case swelling of legs with retained fluid. The last three days have seen an improvement after weeks of distress. The swelling has almost gone. I don't know why yet but there is hope. I am still tired and its difficult climbing and descending stairs but it's important to keep making the effort.

[Purpleprimate in reply to cycli]

I do have swelling but round about my ankles, tight socks don't help. As you will see on my previous post to piglette I have taken some exercise today which is good. I'm due to go down to 22.5mg in a week so will wait to see what happens then. My last rheumy pressed very hard to get the steroids down asap which caused big problems, then trying to get the PMR back under control I was going up in 5mg steps but it was not doing the job, hence all the way back up to 25mg. Snakes & ladders in reverse.

[cycli in reply to Purpleprimate]

same here but has improved last 3 days. I'm due to go from 25 to 22.5 soon if tests are good. am working on a programme of exercise and dosage with experts and hoping to devise some way of monitoring to prevent this yoyoing we all have experienced

[Purpleprimate in reply to cycli]

You sound extraordinarily organised having found some experts to help you.. Please let me know how it goes as I might need some template for my treatment, but I've a lot of faith in my new rheumy. Keep in touch because from what you say your symptoms appear to mirror mine. Thanks.

[Vito5566 in reply to cycli]

Cycli as we spoke before this gentleman has the problem I have too . I’m seeing specialist next week I will report back .

[cycli in reply to Vito5566]

As we progress with the programme I am expecting more of you to see similarities and the hope is we can find a better way of managing dosing of all drugs. It's very hard to rationalise the rapid deterioration from extremely fit ,strong and capable person to that which I am now. However that is the reality and must be accommodated.

[Vito5566 in reply to cycli]

Your so right I get back to you my friend

[HeronNS]

It does seem as though you have become weak, possibly a combination of pred and the reduced activity so many of us have experienced since being limited in activities during the pandemic. Can you see a physiotherapist? Preferably someone who has some understanding of PMR. I have been very lucky because my physiotherapist is good friends with a rheumatologist, and she knew all about PMR and possible pred side effects. I have, throughout the PMR/pred journey (since 2015) been exercising, but sensibly. Mostly walking, but also with targeted exercises for certain areas needing that attention. I'm sure it's made all the difference.

I moved the year before the pandemic struck, and that meant I wasn't constantly walking up and downstairs every day, but maybe only a couple of times a day when I left our building. With the lockdown that became limited to once a day, and within a couple of months I'd twisted a knee and later thought it was probably because I was already becoming weaker. Took a while but eventually that (and an unrelated injury to the other knee) got better. I walk every day. If I can't go out because of the weather I use a treadmill indoors. I also have a pedal exerciser which strengthens other muscles in the legs, and because of my past injuries I do a couple of physio-prescribed exercises just to help prevent future injury.

Keeping fit on pred is an effort but it's worth it. Just be very careful not to overdo things in your desire to get fitter faster. It takes time, but it is necessary. Pacing very important. Good luck.🍀

By the way, there was a person who used to post on here frequently about maintaining physical fitness while on pred, but I've not seen him post for years. He did this because he wanted people to know it was possible to get more physically fit even with PMR.

[Purpleprimate in reply to HeronNS]

I got hold of a rowing machine while Covid was rampaging, like gold dust then, but hardly used it because of the PMR. Thank you for the advice & I will start rowing tomorrow - very gently. The pred has made me sweat a lot (sorry) when I even take a little exercise which is one of it's side effects.

I do get quite down & anxious at times with this disease but I feel much better having 'talked' on this forum & then received such helpful feedback.

Thank you very much everyone.

[HeronNS in reply to Purpleprimate]

Just a word to the wise - don't go even as far as you think you can for the first few days, even weeks. I remember when I took up Nordic walking (I was on pred by then) the instructor said the best way to start was to use the poles for fifteen minutes a day three days a week, which didn't seem like much, but actually was just right, because of course we were using different muscles than we usually did. Eventually I could use them for longer.

[cycli in reply to Purpleprimate]

I don't call it a disease but a condition. Because it's defined by symptoms not a rteliable test it's an unknown. I also echo HeronNS in that one can't trust our previous approach to exercise. Me especially. Training and fitness was always about pushing beyond limits and therefore my instincts are skewed to excess. That's why I am trying to work with experts who will help devise a monitoring regime and that isn't simple. Work in progress.

[AshPen9 in reply to cycli]

I'm seeing the rheumy tomorrow cycli, and one of the questions on my list is does he know a good physio who understands inflammatory conditions and the effects of pred. I feel as if all of my muscles have disappeared! Probably made worse by statins, which pre-dated the pred. I'm on a much lower dose than you but definitely doing a bit of yo-yoing. Please report back on your exercise/dosage programme, I'm sure that lots of us will be interested. Good luck with your reduction.

[cycli in reply to AshPen9]

count on it. watch this space

[Purpleprimate in reply to cycli]

Yes it is an inflammatory condition although some people on here call it a disease as that's how it feels to them. I used to train very hard as I was in a rowing eight & am used to being fit. That I couldn't get out of bed in the morning & walk round the room without having to hang onto furniture was a bit of a shock. When I first contracted this condition I thought I'd breeze through & under rheumy guidance lowered the steroids far too fast so now hopefully have learnt from that mistake. I eat very healthily, have cut my alcohol intake by two thirds & will now exercise with care, not go for the burn. My new rheumy said I needed to take Alendronic Acid 70mg once weekly, as well as my Vit D & Calcium as a DEXA scan won't necessarily show up bone weakness. I used to do a little gentle yoga which was disrupted by Covid & plan to go back to that this week, as I need to stretch. I will be very interested to hear what your experts devise for you as I think will everyone else.

Today at present I'm not feeling bad at all - I'm keeping my fingers crossed.

[cycli in reply to Purpleprimate]

I'll keep in touch on here .This debilitation is hard to accept isn't it?

[Pass7 in reply to Purpleprimate]

Pilates keeps me stretched & moving. I use a reformer.

[Ridge in reply to Purpleprimate]

Be careful. I have deteriorated so much during the past 4years and I now have the help of a physiotherapist. I have learnt that just bending your knees in a certain way is an exercise!!! It is also possible to get a blood test for myositis. Mine was negative but ck ldh est were high indicating muscle inflammation according to Rheumy. I never asked why, steroids or PMR? 🫤 He recommended a physio. I think I wouldn’t go on a rowing machine just yet. Keep to very gentle short exercises 2 to 3 times a day.

[Purpleprimate in reply to Ridge]

Thank you Ridge, I'm listening & I will just go fo a very gentle row down stream.

[Ridge in reply to Purpleprimate]

All the best. Let us know how you go. One of the things that puzzled me at first was DOMP. I just couldn’t understand why three days later it would happen.

[Pass7 in reply to HeronNS]

I exercise regularly but with PMR & prednisone I’ve learned the hard way. Just maintain. DO NOT add any extra weight or extra exercise even if you feel you can. You will pay in the end!

[HeronNS in reply to Pass7]

Think this reply is for you, Purpleprimate !

[Purpleprimate in reply to HeronNS]

Yes Heron. I am nearly 74 yrs old but have always kept myself pretty fit. I now realise that after about 70 you expect things to start going wrong but it is a bit of a reality check. I understand that I must not over do it, but on the other hand not allow my body to deteriorate more than it normally would so there is a balance to be found. With my new understanding rheumy I will always refer back to him re my symptoms & medication. What I need to do but haven’t quite succeeded in is accepting my situation & get on enjoying the rest of my life.

[HeronNS in reply to Purpleprimate]

Yes, as I just mentioned to someone else, patience and acceptance was a big part of my journey. I think that is fairly typical as we seem in general to have been an active lot before pain restricted us.

[Pixix]

Yes, I do, but could be many things, not connected with PMR, or connected! Suggest you see Dr or Rheumy to diagnose? Mine is not connected to PMR.

[sferios]

Hi Purpleprimate. I got PMR three months ago suddenly after my covid booster. I've been on pred for two months now (down to 25mg) and even after this short period of time I am *already* trying to figure out whether my pain is PMR or prednisone-related.

Some people talk about DOMS (delayed onset muscle soreness). Whether this is from PMR or prednisone I don't know. Then there are the small tendon tears I have in my hamstrings that causes me pain. The tears are almost certainly injuries from the disease inflammation, but the fact that prednisone slows healing might exacerbate it.

This whole thing is confusing.

Anyway I just wanted to wish you the best. We're on the same dose of pred wondering the same questions.

[PMRpro Ambassador in reply to sferios]

DOMS is delayed onset muscle soreness - the sore muscles you get from overuse. This can appear with far less exertion than pred-PMR and takes much longer to recede because the muscles are compromised by the PMR inflammation. It has nothing to do with pred in that scenario although pred doesn't help the healing